Amazing Grace

BWH and Children's Hospital Team Up for Unprecedented Lifesaving Procedure

During a January press conference, Angela and Jay VanDerwerken, center, thank Louise Wilkins-Haug, at right, Virginia Silva, front left, and specialists from Children's Hospital, for their collaborative efforts to save the life of baby Grace.

In a lifesaving procedure, Grace VanDerwerken became the world's first baby to receive a stent before birth, thanks to the Boston Fetal Cardiac Intervention Program, a collaborative effort between BWH and Children's Hospital specialists.
Louise Wilkins-Haug, MD, PhD, medical director for the Center for Fetal Medicine and Prenatal Genetics; Carol Benson, MD, co-director of High Risk Obstetrical Ultrasound; Virginia Silva, RNC, MSN, coordinator of Fetal Therapy; and Bill Camann, MD, director of the Obstetric Anesthesia Division, joined cardiac specialists from Children's in a BWH Center for Labor and Birth operating room in November to thread a stent into the grape-sized heart of the 30-week-old fetus.
Grace was diagnosed in utero in September with hypoplastic left heart syndrome (HLHS), a congenital heart defect in which the heart's left ventricle-the main pumping chamber-fails to develop. Grace also had an intact atrial septum. These conditions combined cause blood to back up in to the lungs, damaging the fetus's delicate pulmonary system. These babies are at the highest risk with limited chance of surviving.
Parents Jay and Angela VanDerwerken, of Virginia, were told by a hospital in their home state that they had two options: terminate the pregnancy or hand over Grace upon birth for an immediate open heart surgery with only a 20 percent survival rate.
"We were devastated when we heard the news," Angela said. "We hoped for the best, but we definitely had to prepare for the worst."
In November, the VanDerwerkens arrived in Boston, where 16 specialists from BWH and Children's would attempt a new procedure to prevent severe damage to Grace's lungs and pulmonary vessels before birth. "It's a great team," Silva said. "We've worked together many times, and everyone brings so much expertise to the operating table."
Before the procedure, Camann anesthetized mother and fetus to ensure neither would feel pain and to immobilize them during the surgery. "The anesthesia for both has to be perfect, otherwise the procedure would be extremely difficult," he said.
BWH's fetal medicine experts used ultrasound imaging to guide a catheter through Angela's abdomen and uterus into the heart of the fetus. Guided by Benson and ultrasound imaging, Wilkins-Haug maneuvered a very fine needle into the heart, and then Children's interventional cardiologists gently pushed a wire with a pre-loaded balloon into the baby's heart to deflate the high pressures, which causes the atrium to distend with blocked blood flow. The process was repeated to create a second hole, into which cardiologists slid a stent.
Cheers broke out in the OR as the entire team saw blood flowing through the stent on the echocardiography monitor.
About two months later, Grace was born at BWH. "Grace got to stay in her mom's arms for a while, instead of being whisked off right away to intensive care," Silva said. "There was so much joy in the room. It was a normal, beautiful birth." Grace was then brought to Children's where she had the first stage of the surgical repair for her HLHS.
"For the first time, we avoided the severe lung damage that all babies with this condition have suffered in the past," said James Lock, MD, cardiologist-in-chief at Children's. "It gives hope to all babies born with fatal or near fatal conditions."
In addition to the OR team, countless individuals and departments at BWH and Children's guided the VanDerwerkens through the experience, including Kathy Bennett, RN, nurse coordinator for the Center for Fetal Medicine, and Tamar May, LICSW, of Care Coordination.
The VanDerwerkens brought Grace home to her three siblings in Virginia on Jan. 27. She will return to Children's for two additional surgeries over the next few years. "We're so grateful to everyone involved. It's truly a miracle that she's here," Angela said. "She's amazing. Amazing Grace."

Angela VanDerwerken and daughter Grace prepare to return home to Virginia after Grace’s successful surgery.